Friday, February 27, 2009

2/27/09

Abraham's blood gases have been a little off. He is requiring a lot of ventilator support. This means that he probably won't "graduate" to a lower level of respiratory support any time soon. The size of his head is getting bigger which increases the chances that he actually will need the shunt placed. This is a subjective finding however because different nurses measure each day. Head ultrasounds are more accurate and he is having this done twice weekly. The last one did not show an increase in ventricle size. Given the positive blood culture, infection, the neurosurgery is weighing the risk/benefit of placing the shunt at this point. Other than the increase in his head size he is not showing any other signs and symptoms of hydrocephalus. Please pray that his infection clears, that he requires less ventilator support and that the fluid on his brain drains like it should. I was feeling dizzy and weak today so we came back to the Fisher House early tonight after having dinner. I just called his nurse and she said that he is doing pretty good tonight, not too many low oxygen episodes and he is resting peacefully.

Thursday, February 26, 2009

Isaiah 29

I just read a passage from Isaiah and there are somethings that stood out for me. I often (but not often enough) read a random passage in the bible and somehow (higher power...God) there is some corelation to what I am going thru. So I read Isaiah 29 and without boring you I will just say that for me it had some great insight for me such as Isaiah 29:21 and 22:

therefore this is what the Lord, who redeemed Abraham, says to the house of Jacob: No longer with Jacob be ashamed; no longer will their faces grow pale. When they see among them their children, the work of my hands, they will keep my name holy; they will acknowledge the holiness of the Holy One of Jacob, and will stand in awe of the God of Israel.

Throughout the chapter there are things that applied to today, some of the things I was just talking about with a couple at the Hospital and others with a couple at the Fisher house, just a little more than coincidence.

God bless all of you and please continue to pray for little Abraham.

Glenn

2/26/09

I had a bit of a rough afternoon with one of his nurses. We just don't see eye to eye however she did try to resolve the issue so I need to forgive her. It boiled down to miscommunication also she is not a mother so it's probably more difficult for her to relate, especially with the stuggles a
mother of a premature baby endures. His oxygen levels got very low today so I almost did not get to hold him. The night nurse let me hold him for almost 2 hours, then his diaper was wet so he was not too happy. He opened his eyes a lot after I held him. I am staying at the hospital tonight; Glenn went back to the Fisher House to do laundry for us. We can wash clothes here too however there are many parents that smoke so I prefer not to use the same washers. I am very allergic to cigarettes. Abraham was resting well when I leave his room a few minutes ago. We truely appreciate the love and support that we have from friends and family in Arizona, California, Washington, Oregon and Alaska. It makes everything feel like a small world. The flight nurse that taught the CPR class last night was working the night we needed the helicopter however she was not part of the care. She just remembers hearing about it.

2/25/09 update

Abraham is alert and his nurse said "he has a personality" "I am getting attached to him". She thinks he is going to do just fine. He likes to pull off the bandage from his neck. The other day a nurse scrubbed his neck and now he has a painful looking sore on it (skin is very sensitive in little ones). He is getting some breast milk (1 ml, 1 teaspoon is 5 ml), every 3 hours) in his nasal-gastric tube. The lactation consultant said that I am producing almost enough breast milk for him, only need 5ml more, 1 teaspoon. The neurosurgery nurse practitioner came by today and indicated that he might not need a shunt placement now because the ultrasound is not showing any increase. He had 2 positive blood cultures so if he needs surgery this delays it. He might need the PICC line that was just put in taken out due to the positive blood culture. Please pray that he won't need the shunt placed, the infection clears up and that he won't need another PICC placed. Placement of the PICC and having one in actually increases infection risk however his is how he gets most of the nutrition to grow from. I might get to hold him tomorrow.

Tuesday, February 24, 2009

Potential causes of pre-term labor/delivery

The OB doctor that performed the c-section called today. He said that I have a bicornuate uterus (heart shaped). This can cause miscarriage, intrauterine growth retardation and preterm labor/delivery. I did not know that my uterus was different shaped. I guess it means I have a big heart, just kidding. In San Diego they never mentioned this to me when I had the ultrasound in December. This is not a contraindication to pregnancy, just puts the women in the "high risk" pregnancy category. I guess when I call the OB clinic with questions or problems they will call back (had some issues in San Diego when I had the bladder infection). Also I had a bladder infection in November which contributed, although was treated with antibiotics. This prior infection affects the space between the placental and the uterus. The knot in the umbilical cord was also an odd against him. This puts my mind at ease that I did not do anything to induce the preterm labor/delivery. It's just very frustrating because I don't smoke, drink alcohol and have never done drugs. It must have been God's plan for Abraham to be born so early. He was very active today however he needed rest so we are back at the Fisher House tonight to get some sleep.

Evening update

We got some sleep last night, finally however when we finally got to the hospital to see him they needed us to leave to insert a new PICC line (central IV). They think this is causing the infection. He was so alert and opening his eyes it broke my heart to leave him however they need parents to leave for sterile procedures. We have some friends here visiting so we are going to get some dinner.

Comments

Some people have had problems posting comments. What we have found useful is writing the comment as a text document and coping it and pasting it, because sometimes it does not go thru the first time.

From the McKinley's:
I'm so glad to hear that your little guy is feeling a little better!I was wondering about when you say that you sleep at the hospital. Does that mean that you are allowed to sleep in a recliner next to Abraham or that you sleep in a separate room from him?We love you guys and are praying for you often!

There is a little sleep room on a separate floor that has a little bed, light, and alarm clock. The hospital issues a pager to parents so they can immediately get in touch with the parents to inform them of things, not just emergencies. We can call anytime and talk to his nurse, usually that is around 1 or 2 am before we go to bed (if at the Fisher House). I (Glenn) usually go back and forth between the Hospital and the Fisher House and allow Karen to stay at the Hospital, I go back and forth to get Karen items and to do laundry.

Our little fighter

As you already know his surgery was cancelled today however he was very active today. He is trying to pull out his breathing tube and take the tape off his face. He lost "belly privileges” because he rubs his face back and forth against the blanket. I think he really wants the tube out. We don't want him to do this however it's a sign that he is feeling better. I got to hold him again today. He tolerated it for about an hour. He got a little fussy. His diaper was wet. He gained a pound however it's fluid gain and not "chunk", AKA muscle and fat. He has been soaking his diaper and bed. He might have the shunt surgery on Wednesday depending if the blood cultures are negative for infection. I talked with 2 NICU mothers. Both had twins however for one new mother the boy was stillborn and the girl is doing better. ( 7 weeks in NICU). It was nice to talk to someone that I have a little in common with. She seemed to be dealing well with the struggles that God placed in her life. She said that her daughter is what she was meant to have despite any chromosomal or genetic defects. She has cleft palate and some other medical problems that the doctors are trying to figure out. This mother had a smile on her face, offered advice on lactation and gave me hope. The other mother has one twin in a NICU in Seattle and her other son in a NICU in a different state and does not have any family here in Seattle. I offered that she could come to lunch or dinner with us sometime however her son had surgery today so she did not want to leave the hospital. Maybe another day she can hang out with us in a different environment other than the hospital. Please continue to pray that his infection clears up and that his brain heals. Glenn will update the pictures. There is a really cute one of him in my arms. I think Glenn should have a chance to hold him too however he is too nervous. It makes me nervous too however I have handled babies connected to medical equipment before, just not my own. We are back at the Fisher House tonight so that we can get some sleep (bed and pillows are more comfortable).

Monday, February 23, 2009

No Surgery

Good news, he is actively moving and peeing. He has recovered from the heart surgery finally. However about 2 hours before his brain surgery the blood work came back positive for infection so they won't do the shunt placement until the infection is gone. He needs the shunt but they can't risk further infection, especially of the brain.

Sunday, February 22, 2009

2/22/09 evening update

The doctor checked his ear. They are not 100% sure if the fluid was cerebral spinal fluid or not. The CT scan showed evidence that the ear canal was blocked. The doctor removed pus like substance from his ear. His ear canal was not red however due to his size the doctor was not able to see the ear drum to rule out an infection. I am staying at the hospital again tonight. I am getting a like annoyed with the smell of smoke in the bathrooms and elevators however I just need to let this go. Glenn is back at the Fisher House right now doing laundry. He will be coming back tonight. Since surgery is in the morning I am going to try to get some sleep.

The Good, the Bad, and the Ugly

Oh boy:

The Good: Abraham's blood pressure is stable enough for surgery tomorrow (Monday) at 0830. The ear drum on children is easily healed (read the ugly).


The Bad: His Oxygen is at 45% (lowered from 50%), if O2 supply is above 40% for preemies for an extended period of time (days) then blindness can occur (yes, this is not the ugly part). He also has air building up in his stomach, this is bad, but at this point it is minor compared with everything else.


The Ugly: This morning fluid was coming out of his ear, this is a mixed good and ugly. Pressure had built up in his head so much that his ear drum ruptured to relieve pressure. The fluid is spinal fluid, and currently is not infected; however, it easily could be now due to exposure to outside his body. He went for a CT scan today, results are not back.

Karen and I are under a massive amount of stress, there is something new everyday. Right now he is getting another chest X-ray; poor little guy has gotten more chest x-rays in 3 weeks than I have in 35 years.

Saturday, February 21, 2009

Need Prayer

Abraham's blood pressure is dropping, his red blood cell count is low and his carbon dioxide level is too high. He is in respiratory acidosis. He had to be restarted on the blood pressure medication, got a blood transfusion and ventilator settings are as high as they possibly can be and he will probably have to be back on the ossilator/ventilator. On a more postive note I asked if he opens his eyes still or not. The nurse said he really has not opened his eyes today. During this conversation over the incubator he opened both eyes twice as if to say "Yes mother I can open my eyes, now let me sleep". This was reassuring to me that he knew I was there. He must be able to hear my voice so that is a good thing. Glenn is at the car repair getting the window fixed. The neurosurgeon wants to talk to both of us on Sunday. I am nervous about this meeting. Well I am headed back in to see him.

Friday, February 20, 2009

Surgery

He had his surgery today for the PDA. He did just fine. However his head is showing increased swelling, h ydrocephalus, therefore will need a shunt place on Monday if the ultrasound still shows problems or over the weekend if it becomes an emergency. Please pray that he will not need the shunt placed. Also please pray that we get some rest and have peace.

Bad day gets even worse

Glenn dropped me off at the hospital and went back to the VA Fisher House. Someone broke the window on our Jeep and stole the GPS, stand and charger within a couple of hours. We are not sure if anything else was taken. It's was probably someone wanting it for drugs. Thankfully we are safe however we will need the window repaired and probably have the insurance get us a rental car. I guess nothing will be left in the vehicles from now on. It's too tempting for people. I told Glenn that I would just stay at the hospital with Abraham since his surgery is on Friday. Well I need sleep. Please pray for peace and comfort as we have so much to deal with right now.

Added by Glenn 3 mins later....
Karen, beat me to putting this in. I watch the security video and they broken in and left about 20mins before I went back outside to the jeep. It was a white car but could not make out the plate. I also cut myself cleaning up the glass, and the reason that SUCKS is that now I can't touch my son because I have an open wound. I am very upset, not for me, but the incredible trouble this is causing my family. I'm under enough stress...I don't need this.

Thursday, February 19, 2009

Bad Day

My follow up appointment was a complete waste of time and effort. It could have been done over the telephone to be honest. No physical assessment was done except for vital signs. Abraham will have the heart surgery tomorrow morning and possible shunt placement over the weekend or on Friday. The PDA did not close up with the medication. I am questioning if we continue or stop everything. Glenn wants to continue and I don't want to see him suffer or not have a quality of life. The doctor is not recommending withdrawing care however if the surgical interventions are not successful then that discussion may come up again. I question why I told Madigan to continue life saving events on the first day of birth. I wonder if he would he be better off in heaven then going through hell here. However since we were so far away to said to continue. The doctor told me "he is fighting to not be with us any more" that day. We are packing stuff back up to go back to Seattle right now. Please pray for healing and peace. This has caused great strain on our marriage as well as our emotions.

2/18/09

The neonatal fellow (doctor training to specialize in neonatology) indicated that neurosurgeon requested to repeat head ultrasound to look for any changes. A nurse from neurosurgery came to his room. If he does need a shunt (device to drain cerebral spinal fluid) it would be placed on Friday or next week. She assured me that it was not an emergency and it was okay to go home to Bremerton for my own follow up appointment on Thursday (I really did not want to leave because I have recovered well from the c-section, at least physically, emotionally will take some time). If he does require a shunt he will have a temporary one for now. It is unknown if he will require a permanent one. He might require a permanent one called a VP shunt (internal drain from the brain to the abdomen, cerebral spinal fluid is excreted out of the body). Some kids require temporary ones and some require permanent ones. I got to hold him again today. He wanted to get comfortable and put his face down against me, which closes the airway on babies and decreased oxygen level. I could feel the congestion in his lungs. When he is out of bed in the upright position this helps clear the chest congestion. Babies can’t cough the icky stuff up so he is suctioned. After he was suctioned a few times I did not feel the “rice crispy” feeling on his chest. His nurse was willing to provide care to him while I held him. I held him from 4:30 until 6:15. I was falling asleep and he was tickling me. When we left for Bremerton he his oxygen saturations, heart rate and respiratory rate were great. He looks like he is gaining some weight too. It felt weird to pick up my 13 pound cat at home because she is so much bigger than him. Good news: kidney function better, urine output increased, no sign of PDA being opened and no meningitis thus far. Please pray that his vital signs remain stable, brain damage to be healed and that the ventricles on is brain are normal size so that he does not need surgery. We received some cards today at our house, thank you so much for the kind messages.

Wednesday, February 18, 2009

Addresses

Some of you have asked for our address at the VA Fisher House. We are expected to be here for at least another month, however the plan always changes. It depends on what kind of care he needs. It is part of the Seattle VA. Yesterday we found out bad news about his brain but good news about the PDA. An attending doctor and a resident both said the murmur was less. There is potential for the PDA to open up again. The medication has affected his urine output and kidney function however the doctors said this happens and were not too concerned about it. His antibiotic doses were held because they are metabolized by the kidneys and the Vancomycin was at a toxic level in his blood. The lumbar puncture (spinal tap) culture has been negative (this is good) so far however they wait 5 days to see if bacteria grows. There was "old blood" in the spinal fluid sample which is consistent with a brain bleed. Please pray for healing of his brain, kidneys recover, infection to clear and PDA to remain close without any further medical intervention and no surgery and that we can handle the ups and downs and stress.

Tuesday, February 17, 2009

Questions?

If you have questions, please ask them in this blog. If you have a question, chances are that someone else is thinking the same thing. This blog has made it much easier to disseminate information.

Friends and Family, please do not feel we are ignoring you by not calling or answering our phones. Our phones have to be off when we are in the NICU (Neo-Natal Intensive Care Unit) and we turn our phones off at night to get some sleep.

If you can not figure out how to post a comment to ask a question, call and I will try to walk you thru it. We set the blog up so Anonymous posts can not be done, this was to prevent unwanted comments (such as SPAM) and to block individuals the may make obscene comments (which has not happened as of yet).

Down Slope

The roller coaster ride continues. After 2 good days we knew today would be bad. And unfortunately we were right. He had a CT scan today and he now has a bilateral grade 4 brain bleed, which means he has severe bleeding in both side of the brain. The hospital staff will discuss tomorrow his options and how they want to proceed and will talk to us at around 1400 (2pm).

Karen is taking this very very badly, I had her leave the room and call some of her friends to comfort her....I felt incapable of giving her the support she needed at the time. We are not giving up, no matter how tough it gets.

Please continue to pray for little Abraham. The concern now is that he may have no interaction with the world.

We appreciate the prayers and all the things people have done for us. No matter how small you think it is, we appreciate it. We are just so overwhelm right now. This little exercise in typing helps me cope.

Monday, February 16, 2009

To Have and to Hold

He was stable enough on night shift that I got to hold him. It's called kangaroo care (skin to skin contact). He tolerated it for an hour then his oxygen saturations started to get low so his nurse put him back into the incubator. I might get to hold him again tomorrow. The doctors indicated that the blood culture might have been a contaminate rather than accurate. The bacteria that the culture grows is on everyones skin. He had a lumbar puncture (removal of cerebral spinal fluid) to send for culture and to get a reading of the white blood cell count. He is being tested for meningitis (infection of the brain; some bacteria are able to pass the blood-brain barrier and cause an infection in the structures in the brain. He is doing better, which could be because the antibiotics are working (clearing up the infection) or the PDA is closing or a combination of both. He completed the 3 doses of the medication for the PDA. I think he has an Echo cardiogram tomorrow. Please pray that he remains stable enough to be held, that the PDA is closed, that his infection clears up, his oxygen requirements on the ventilator are at room air or close to it, Fi02 at 21% (currently needs 40-100% depending on what is going on) and that he is stable enough for us to go to Bremerton for Karen's follow up appointment on Thursday. Pictures of him being held will be posted later, Glenn is eating some dinner.

And Glenn donated blood today.

Sunday, February 15, 2009

Day 14

Abraham was comfortable today. He mostly just slept and was nicely tucked in with blankets in the incubator. His oxygen saturations went up and down however this is typical for a premature baby. He grew a little in length, he is now 16.8 inches. His weight is 2.10 lbs (about the same). He is a little fighter, he gets his hands and feet going when anyone messes with him. The doctor today said that the medication for the PDA sometimes works and sometimes does not work. It can affect his kidneys (low urine output), so far he is fine in fact he pees more than the diaper can absorb. He is on more antibiotics because his blood culture was postive for gram + cocci. His blood pressure is also low so he is requiring medication to increase it. He has sepsis (infection in the blood) which in very common in hospitalized babies or immunocompromised people.For babies this occurs due to an immature immune system and multiple medical interventions (IV starts, blood draws, suctioning, breathing tubes, ect). Please pray that the antibiotics cure the infection, that the Indomethicin closes the PDA, without any side effects such as damage to the intestines or stomach, bleeding or kidney problems. Please also pray that the brain swelling decreases and that he won't need the neurosurgeon to place a shunt and that he does not need blood pressure medication. Thanks again everyone. It's 10:30PM Glenn is doing laundry and I am going to put away some clothes since we will be here for awhile. Good night.

Status change :-)

We decided to get some sleep after the tough news. The doctor just called us and he is stable: no oxygen desaturations (low oxygen level) today and they are going to give him the Indomethicin for his PDA. Neurosurgeon does not see that he will need the shunt placed at this time. Praise the Lord. We apologize for not having time and turning away visitors yesterday. It was a rough day for us emotionally. The prayers seem to be working. Thank you all for all the support. Some of my former FNP classmates, Karen and Jill are coming to visit us today. The splint on his left arm is because he has an IV there. Children like to wiggle so this is standard practice. Oh he did not like the foot warmer the nurse put on him so there are pictures of him kicking it off. It sounds like he will stay at Children's until he becomes what nurses and doctors describe as "feeder and growers". He will have to weigh a certain amount before we can take him home. Also he has to have be feeding well, have enough wet diapers and no low oxygen levels. This is awhile from now but is something to look forward to. I was starting to fall asleep when Glenn took the pumping pictures that is why I have a dirty look on my face. Thankfully Lynn in San Diego gave me a nursing cover so that I can pump at his bedside with privacy. We are headed back there soon. Will post later if we feel up to it.

Saturday, February 14, 2009

Roller Coaster Ride

This is a quick synopsis, Karen will fill in the blanks later:

Today was probably one of the worst days yet. Yesterday he was doing great, today... they verified he needs heart surgery, but they are more concerned with the buildup of fluid in his brain. The canal that drains the spinal fluid from the brain is clogged and there is a buildup in the brain and is causing alot of damage. We saw the ultra sound of the brain today compared with last week and the size difference of the sacks were the fluid is, is much larger (Hydrocephalus...Karen will fill in).

He is on more IV's and they had to place a splint on his left arm to prevent him from moving too much.

This has been a very difficult day. The doctor said that the one week stay here is probably going to be at least 6 weeks now... if things get better.

Quick Update

The doctor called around 4AM today and his blood pressure was low during the night and he required blood. Changes in blood pressure can contribute to increased bleeding in the brain in premature babies. Please pray that the nurses caught this problem and corrected it early by infusing blood before any further brain bleeding occurred.

Friday, February 13, 2009

Transfer to Seattle...REALLY

I stayed at Madigan last night, Glenn was in Seattle. The charge nurse and doctor made arrangements for me to stay in a hospital room. The night charge nurse got me a tray for dinner and I was able to order breakfast. Children's NICU transport team arrived and got him ready for transfer today, 2/13/09. The NICU nurse took some pictures and will send pictures soon. He seems very comfortable, thank you for the prayers. Abraham tolerated the transfer well. He was so stable that the ambulance did not even have to use the lights or siren for transport. His blood gases were a little off when he arrived however the last one checked was better. The NICU environment at Children's is calmer and more private. Appears to have more advanced technology and the nurse ensures a quite environment for him. They also have a top of the line breast pump to use there (same one that I am renting). Also as a breast feeding mother I can get breakfast, lunch and dinner in the cafeteria at no charge, up to $9.00 worth of food. This is great because there are many options including a salad bar that actually looks good. They even have a special coffee machine (I am not a big fan of coffee but this would be a nice treat if I was). The doctor at Children's indicated today that they would like him to grow a little more and would like their own assessment before making any decision about surgical or medical repair of the PDA. This doctor thinks it might heal on it own. Please pray that it heals without medical or surgical intervention as there are many risks involved with either intervention. I am very impressed with hospital and staff. I ask for prayer that he can remain in Children's until discharge home rather than being transported back to Madigan. I just think it's too hard on a little one to be transported back and forth. I plan to discuss this with the social worker on Tuesday. Also it is a 15-20 minute drive then an hour ferry ride from our house (would allow us to relax or sleep while heading back home). Thanks again for everything. It has been made evident to us that God provides exactly what we need when we need it.

Thursday, February 12, 2009

Transport to Seattle

Abraham will be moved to Seattle Children's Hospital today for surgery.

We will be staying at the Seattle VA Fisher House, don't know which room yet.
1600 S. Columbian Way
Seattle, WA 98118

We will probably be there a week then back to Madigan Hospital.

*****
Change of plans, due to other emergencies (not his), Abraham is still at Madigan. Karen was given a hospital room for the night there. Glenn is in Seattle at the Fisher House. Karen will ride in Abulance in the morning to Seattle Children's (hopefully).

Wednesday, February 11, 2009

Day 9

Abraham is doing well on this new ventilator. Blood gases were a little off today however the blood was obtained from a heel stick rather than directly from an artery (umbilical arterial line is out) so probably not very accurate. He is off the light therapy because his bilirubin levels are good. Glenn said to him “I love you Abraham” before we left and he opened his eyes” he did not want us to leave his bedside tonight.

The pediatric cardiologist saw on the echocardiogram PDA (patent ductus arteriosus) is open. More information I found this website: http://www.healthsystem.virginia.edu/uvahealth/peds_cardiac/pda.cfm. I briefly read it so hopefully it’s accurate. This means that 50% of his blood is going to his lungs (causes congestive heart failure and pulmonary edema) and 50% to the aorta (normal). His heart has developed with normal structures. All babies have a PDA while inside the mother because the placenta does all the work of breathing. In full term infants the PDA usually self corrects in about 7 days. In preemies however the body is not ready to make this change. Therefore it is managed with medications or surgical invention. Abraham has fluid in his lungs and his heart is increasing in size. In Abraham’s case he is not a candidate for the medications because he received steroids last week and the risk of bleeding and bowel issues (NEC or a perforated bowel which would require colostomy or ileostomy). Madigan does not perform this kind of surgery. My choices for transfer for surgery were Seattle Children’s or Mary Bridge. I chose Seattle Children’s because I know they specialist in children and I have heard bad things about the other hospital from nurses and parents. He might transfer around noon tomorrow. The neonatologist consulted with other doctors including the pediatric cardiologist and they all agree that surgical intervention is the best option.

We are not sure about the sleeping accommodations over there. The social worker will check in the morning about the Seattle VA Fisher House or the Ronald McDonald House near Children’s. We are not sure if we qualify or not because we live an hour by ferry boat. I did hear that there is a sleep room for one parent near the NICU. I worked there before so it probably is not as comfortable or private as where we are currently. Once he is able to transfer he will come back to Madigan

Prayer request:
Abraham remains stable enough for transfer.
Abraham and his parents are calm during transfer. He will be going by ambulance with a NICU team: respiratory therapist, nurse and maybe a nurse practitioner from Children’s. The trip is 1 hour from Madigan. We are not sure if a parent can ride in the ambulance

Our coping with so many life changes. He is having a very hard time with this because he expected to stay in Bremerton until Friday to have the contractor take picture of our house (we had planned to have some renovations before the baby)

Comfortable sleeping and breast milk pumping area at Children’s. Access to electrical breast pumps.

Madigan Fisher House will have a room for us when Abraham transfers back, not sure how long he will be at Children’s

Expertise of cardiac surgeon, there are many risks involved in this surgery however the risk outweigh the benefit.

Tuesday, February 10, 2009

The Links

New people the blog is:
http://babygoddard.blogspot.com/

The picture link:
http://picasaweb.google.com/GlennGoddard/Abraham#

This is just an easy way to find the links or send them on.

Day 8

Abraham is still on the conventional ventilator; He is breathing over it. They had to lower his ventilator settings because his C02 level was too low. Has mild pulmonary edema and is requiring frequent deep suctioning of in his trachea. I am not sure of the pathphysiology (cause) of the pulmonary edema. This might be a common thing for preemies. For an adult this is a bad thing would mostly likely be associated with congestive heart failure. I would need more information on the cause of this for him. In his case this could be related to the ET tube agitating this trachea. I can’t remember right now.

He got his head washed today in preparation for the EEG. The nurse advised that my voice could disturb the testing so I stayed out of the room. It will take a couple of days to get the results. This test looks at brain activity, specifically looking for seizure activity.

He is getting 1 milliliter of breast milk every 6 hours in his OG tube. I was there when he got it tonight. He had his first poop today. I got to help change his diaper tonight however I was very nervous even though I have changed many diapers when I worked as a pediatric nurse. He had some more poop to come out however we just changed him and let him be. He was getting fussy when he has a wet diaper or when you mess with him too much.

He also had a wonderful NICU nurse who worked at Phoenix Children’s Hospital NICU in the past. I worked on the pediatric ward with bigger kids there however I know that she come with a lot of experience as it’s a top notch NICU. She taught me how to comfort him with my hands. This involves gently pushing his feet up against his hamstrings and placing his hands on his chest. He seemed to like it. I will teach Glenn the same technique.

The nurses are requesting to be assigned to him. I think it’s because he is so adorable. The nurse he had today said tomorrow that he will have a new nurse. I already find it easy to feel comfortable with the nurses he has already had. It will be difficult to adjust to new nurses however most of them talk to me and answer questions any ways.

I went to Mother’s Own Milk group today. I was a little hard because all the mothers had a baby with them however I was able to get more information about breast feeding. The lactation consultant is going to get me a manual pump in case I am away from the NICU or Fisher House.

Glenn drove home today, got the temporary birth certificate and paperwork for the official one. He is going to check into his command tomorrow. He also got supplies for our cats and bought Dr. Sears Premature Baby book for me to read and some veggie tales that we can read to Abraham.

He also got the umbilical lines out today.

Good night and thank you for all the support.

Email Update

Hi friends and family,


Just sending this out to see if the new people added get the information. Please feel free to forward this on since I may have missed people, someone from church, scrapbooking, or Triwest in San Diego. We truly appreciate all the support whether it be praying, sending a us a note, caring for our two cats, driving down and going out to dinner with us, giving us advise on premature babies or parenting in general it has been helpful. Thank you.

I am not able to take a ton of phone calls because I am adjusting to multiple situations: first time mom and of a premature baby in the NICU, pumping breast milk for a baby that I can’t even hold yet and a new base. Also I am not a morning person at this time. I am going to try to get back on a normal schedule since the team does “rounds, this is a report where the nurses, residents and attending physicians discuss the patient’s plan of care. It’s daily at 9:30AM in the NICU. I think I will try to go in the morning however given my nursing background and knowledge this could potentially cause me to over analyze. So I might wait a little longer.

Blog will be updated shortly. Since Glenn is in Bremerton the new pictures from today will be updated when he gets back to Madigan, probably tomorrow, depending on the weather. It snowed today in Washington so I advised him that it would be safer to stay at our house, (the cats like having him home any ways).

Since cable was less expensive if we got a home phone line too. Glenn bought a home phone today. That # is (360) 813-1594. We are able to check messages even when we are not at home. Glenn is there tonight 2/10/09 so please don’t call too late or too early in the morning.



Here are the links:

New people the blog is http://babygoddard.blogspot.com/


The picture link: http://picasaweb.google.com/GlennGoddard/Abraham#

Monday, February 9, 2009

1 Week Old

Today we had a meeting with the Pediatric Neurology doctor. Due to the brain bleed he might be blind, have speech difficulties, and or motor control problems. Karen and I are trying to stick to the positives.

He was shifted to a new ventilator which allows him to breath on his own, and gives assisted breaths when needed.

He had his first feeding today, 1cc of breast milk. They did not expected it to stay down, this is just his introduction to food.

Some time this week he might get a cat scan, MRI, EEG, and head ultrasound.

Karen needs sleep and will add more later.

Sunday, February 8, 2009

Day 6 of life for baby Abraham

His ET (endotracheal tube, AKA: breathing tube) was replaced with a bigger tube because he has grown a little. Per the resident they are changed it at least every 7 days because they can be blocked, won’t work as well and can increase the risk of infection. His blood gases were a little abnormal today after making the ventilator and ET changes. However after Glenn and I got there he stabilized. He received blood again today because his hematocrit (the number of red blood cells and the size of red blood cells. It gives a percentage of red blood cells found in whole blood (healthline.com, 2009) was getting low. Adults can handle a drop in this ex: after major surgery with blood loss, however a premature baby can not. Glenn and I talked about donating our own blood so we know it’s safe however the resident does not feel that Abraham will need more blood. The resident assured us that blood given to premature babies is very safe and extra precautions are taken.
Current medical management; Hyper Al (vitamins, minerals and sugar) and lipids (fats) (Basically Intravenous,” inside the veins, nutrition), umbilical cord venous and arterial line (to draw blood gases without poking the baby), isolette (special bed to help regulate body temperature), photo lights (lowers bilirubin level, his is fine however the resident prefers to keep them on him), ventilator (assist with breathing), IV (intravenous, “inside the veins”, fluids additional sodium in his IV because he had a low sodium (salt level). Resident described this as due to possible (salt wasting) which occurs in brain injury such as concussion. The brain signals the kidneys to release more salt. The resident does not know this for sure however this is the best explanation. This upset me because it was another sign that brain damage has occurred. The resident said that they did not know for sure and do not know the outcome. He can not say that he grows, graduate high school, get a job and be able to pay taxes or not.
He might get to have breast milk thru an OG (orogastric) tube. This will be a small amount however because of oxygen deprivation all this blood was shunted away from his bowel and gastrointestinal tract. Green drainage is coming from his belly. They are not sure what it is. I questioned if it was bile (liver produces, gallbladder releases in response to eating fats) or it if stool. I also wondered if he had NEC, (necrotizing enterocolitis) however the resident said that this is not a concern at this point in time.
A care conference is scheduled tomorrow with the team, pediatric neurologist, cardiologist and neonatologist. The resident feels that his is doing better and is NOT recommending stopping life saving techniques in fact it will require review by the ethics committee if that decision is made so they are not recommending this. Sorry if anyone was confused on this because the doctors and Glenn/Karen are not ready to say stop any ways. We believe prayer and God’s touch will heal him after all Abraham means “Great Faith”. FYI his name was picked out even before we knew for sure he was a boy. So his plan was already made by God.
Glenn has been a huge support. I am truly thankful to have such a wonderful husband. He created the Blog today while I slept. He went to the store: got a stop watch to hang around my neck to kept tract of pumping time, little pen to hang off it (since I am always dropping it) and a drying rack for the breast pump supplies. He also has made food and did laundry. Since we are limited to 3 bins (one is already full) in the breast milk freezer he bought breast milk storage bags since they will take up less space. Our 3rd wedding anniversary is on Valentine’s Day and this will be our first one together. We have been thru some difficulties over the last 3 years however we have grown stronger in our faith in God and closer as a couple as a result. God has always provided support for us during difficult times.
Today I can do more for myself, wash my own feet and pain is being controlled with one dose of Motrin. This is good since Glenn will be headed to Bremerton some time this week to check in at this new ship and check on the birth certificate and enroll Abraham in Tricare and DEERs.
For those of you that don’t live in Washington be assured we have great support here despite having been in San Diego for the last two years. It feels like with never left Washington. Our pastor, his wife and two of our friends from Silverdale Baptist Church came to visit yesterday. They saw Abraham, prayed over him and brought some breast pump cleaning supplies which came in handy especially at 2AM. The breast pump wipes are so much easier to use then washing with soap and water or microwaving in the steam bag. Also the family that rented our house for the past two years have done many things for us including driving Glenn down to Madigan while I was en-route by ambulance last week. They also got me some clothes to wear and Leanna helped me to wash my hair when I could not. They even checked on our cats. Thank you so much. Wow God does provide for us exactly what is needed.
If you would like to contact Glenn his e-mail is Glenngoddard@gmail.com. He could use some encouragement and support. We are headed to bed now (well at least Karen is).

Recap Email

Friends and Family,

We are still a bit overwhelmed however created an “Abraham directory” to send one e-mail update to everyone. This will allow us more time to get rest, see him in the NICU and for me to pump breast milk. We did not expect to be parents so soon; we thought we had until May however God had another plan.

Please let us know if you prefer not to receive this information. His pictures are updated when new pictures are taken and we have time to upload them. The link is: http://picasaweb.google.com/GlennGoddard/Abraham#

We turn our phones off when we are in NICU as it is not allowed to be in there.

We are staying at the Fisher House on the Madigan Army base because our house is over 40 miles away. It’s a nice set up and is completely provided to us free of charge. We are in room 5. Here is the address

9999 Wilson AvenueFort Lewis, WA 98433



Just a recap: last Sunday I was 26 weeks and 4 days pregnant, my water broke around midnight, on examination was 3 cm dilated measures to prevent labor were unsuccessful. Normal full term pregnancy is 40 weeks. Since there was not NICU (neonatal intensive care unit) at the Naval hospital, the plan was to transfer me still pregnant by ambulance to Madigan Army Hospital, 40 or more miles from Bremerton Naval Hospital, by status changed so then this quickly changed to helicopter. The flight team arrived to transfer me; the doctor said “she is already for transfer”. The flight nurse said “you need to check her”, meaning to see if the labor progressed. The doctor apologized saying “I am so sorry but I need to check again and it may take some time. I said “that’s okay I will just pray” he said if its okay with you I will too. I was found to be 5 cm dilated (10 cm means the baby is ready to come out) and fully effaced, the doctor also felt Abraham’s hand hanging out. Flight nurse: “I don’t want a baby delivered in flight”. It was deemed that I was too unstable for transfer due to the risk of the cord falling out, this would be the baby’s nutrition and oxygen would be compromised. So they kept me on the bed until the flight team returned. The nurse anesthetist, OB, and pediatrician all came in to get my consent for an emergent c-section and helicopter transport for my baby. They prayed with me and then transferred me to OR room. Glenn decided to stay out of the OR room, it was small and required many specialist. Our nurse Wendy goes to our church and revealed to us later that there was a knot in his cord and this would have compromised his nutrition and oxygen inside the womb.

I did pretty well, no complications, just a little vomiting, for me however a different story for Abraham. He did cry and I was pleased to hear that since it requires oxygen and breathing for that to happen. I could not see him. The nurse anesthetist ensured me that he was a boy. He advocated for me to take a look at him. They said, “Oh he is looking for mom” his eyes were wide open and he was trying to see me. Glenn saw him when he was transferred out of the room. He was born at 4:45 AM on 2/2/09, approximate weight of 2.2 pounds and length of 15 inches. He was not expected to live long enough for helicopter transfer; in fact he transferred around 9:30AM. His breathing tube kept coming out. It came out in flight as well.


He required full CPR including for respiratory and cardiac support. Because of being deprived of oxygen he suffered from damage to his brain. On Monday we were grateful to hear that it was a grade 1 (mild) intraventricular hemorrhage (bleed) however his repeat head ultrasound on Friday indicated grade 2 on one side and grade 4 (severe) on the other side. At this point in time it can’t be predicted his level of functioning. Unfortunately damaged brain tissue can not re-grow, nor can medications or surgery correct his problem. His brain is still developing so it’s possible that the other side of the brain can take over function and he might end up with only mild neurological and developmental problems. The doctor indicated that he is “not God” so he does not know the outcome. I ask for prayer that God will step in and completely reverse the damage where the doctors question “wow is a scan of the same the same baby”. I am trying really hard to believe that God can do this however am accepting that fact that I have over 10 years in the nursing field and would be a good mother to a child with special needs.

Oh a positive note: he is so adorable, heart murmur is decreasing in size, kidneys are functioning better (peeing like crazy; he gets fussy when he has a wet diaper, no signs or symptom of infection however he is on antibiotics and antifungal medications for prevention. Still on a ventilator/oscillator (lungs are immature), he is maintaining his blood pressure without blood pressure medications. He does respond to noise touch and moves his body (bit of a wiggle worm). They laid him on his belly last night and he is a lot more comfortable. His nurse today said that she only gave him pain medication around 8:30AM. He is happy on his belly.

Since my pain is way better and I am functioning better (only Motrin since Wednesday, no use of wheelchair use to get to the NICU (long walk from hospital lobby, since Thursday). Glenn stayed there all night and I went over there today. I have been back at the Fisher House since 6:30 PM. I also need prayer that it’s okay for me to take care of myself and not feel that I am abandoning him when I am not there.

Blog Start

Katie McKinley recommended that we start a blog for Abraham, so here we are. I will start by coping in the previous emails, then we will add info as we get it.

The first few may not be in order.