Friday, August 27, 2004

Safe and Sound

Holland made the trip back from Children's hospital today and is now resting safe and sound at St. Joe's in her isolette next to her little sis. In some ways I feel that she knows she is back. She definitely looked to be resting so much easier after they cleaned her up a bit and got her settled in. The staff at St. Joe's was so kind during her absense and asked about her everyday. They all missed her and were excited today about her return. I know they will give her the TLC that she needs over the next few days. In no time at all she will catch back up to Eden and they will be sleeping in a crib together. I can't wait!

Eden had another wonderful day today. She is the model CPAP baby! Take a look at the picture and you will see just how cute she is. She is up to 6 cc's of breastmilk every three hours. That's half way to full feeds! She should start getting fatter any day now. Both babies are at 1 lb 8 oz. We're hanging in there for the two pound mark. Tonight at 3:02am is their 4 week birthday. I can't believe so much time has passed so far. 28 days with many more to come...and every one of them a blessing.

Thursday, August 26, 2004

Roller Coaster

Other families that we've talked to, as well as the doctors and nurses, have described this experience as a roller coaster ride. Boy, isn't that the truth! We continue to be thankful that each "down" has been followed by a new "up". This has been especially true over the past couple of days.

I got a phone call from the doctors at Children's Hospital yesterday morning at 7:30am saying that Holland was very sick and that I should come to the hospital to be with her. Around midnight following her surgery she took a turn for the worse and was having a lot of difficulty maintaining her blood pressure. She also had very high levels of CO2 in her blood, was not producing any urine, and a respiratory culture indicated that she had another bacterial infection. They began treating her with blood pressure medications, antibiotics, and greatly increased ventilator settings. Many of the symptoms that she had were similar to those that Eden had and she responded very similarly to treatment. Throughout the day yesterday she began to show signs of improvement. Today she actually had a very good day, all things considered. Her blood gasses were much better and they were able to wean her vent settings back down. Her urine output was back to where it should be and one dose of hydrocortisone yesterday worked to improve her blood pressure. She also got her chest tube out and appeared much more comfortable. She should be able to return to St. Joe's tomorrow morning if all goes well. Each day I am totally amazed by what a strong little girl Holland is. More than one doctor has commented that even when she is very sick, she doesn't act sick! She continues to move around and gives her nurses quite a hard time when they mess with her. I hope that she'll always be the kind of person who makes her needs known!

Today was an incredible day for Eden and they saved a great surprise for us at St. Joe's when we got there this evening. Eden was on CPAP!!!! She was doing a great job breathing on her own, and she looked so cute in her little helmet. She had been on it for about 6 hours when we were there and her blood gas at 9:30 was as good as it had been on the ventilator. They'll be keeping a close eye on her for 24 hours to make sure she can maintain it, but even if she is only on through the night she has made a lot of progress. I held her tonight and got to hear a couple of little squeaks. As her throat heals we'll be able to hear her more and more. I am looking forward to some lusty cries someday, and even to the day when I just wish she would be quiet!

Tuesday, August 24, 2004


Hi everyone. Thanks so much for all the wonderful comments. We are so lucky to have such awesome and caring friends and family! Holland had her surgery this morning around 10:00am and everything went fine. It was a bit better this go around because we knew a little bit about what to expect. Of course, it was still a LONG and stressful wait until the doctor came out to tell us how it went. The surgeon said that she showed improvements in her blood pressure as soon as the surgery was finished. She's been having some other problems, such as high levels of urea and creatinine, and blood in her urine and ET tube. She also had low hemoglobin and hematocrit levels which could be related to another infection so they have started her on antibiotics in case. We've been told that it is possible that some or all of these problems are related to the PDA, but we'll have to see how things progress from here before we will know for sure.

Eden had great blood gases today and they were able to turn down some settings on her ventilator today. She is making excellent progress! They also started her on a dose of caffeine and we're hoping that she will be able to come off the ventilator and try CPAP before the weekend. I got a nice long cuddle with Eden today and we both enjoyed it very much!

Here's a picture from our first double kangaroo session on August 21st. Dad is holding Holland and I am holding Eden.

Monday, August 23, 2004

PDA Blues Part 2

We found out this morning from Dr. Judge that Holland's latest echo shows that her ductus which was nearly closed the other day is now "wide open" and will need ligation surgery to be closed. We are a bit disappointed but not too surprised as this was always a possible outcome. We talked it over and decided that the best option for Holland is to have the procedure done quickly and get her back to St. Joe's asap. Children's Hospital in Detroit is able to take her today and perform the surgery tomorrow so we will be transferring her there this afternoon. Dr. Judge tells us that we should be confident that Holland will do well as she is in a better place healthwise than Eden was when she needed the surgery. Holland is just now starting to put on some weight and her feedings were increased to 4 CCs this morning. This may be a small setback for her as they will have to take her off the feedings and put her back on IV fluids.

Eden, on the other hand, is now doing well and catching up to her big sister. She has had no problems digesting her feedings of 1 CC every 3 hours and will be increased soon. She also had another head ultrasound today and is showing no change in the IVH, which is a good thing because it has not gotten worse. It seems like they keep passing the buck. If one is doing well the other is doing poorly. Hopefully that will change soon and both girls will show progress in the right direction and continue to grow.

Well that's all the news for today. I just want to say thank you everyone for all the love and support! We appreciate it more than words can say. Please continue to keep the girls in your thoughts and prayers as we approach this new bump in the road...

Thursday, August 19, 2004

Tiny Miracles

Today Eden took a long nap on Mom during her first kangaroo session. Both Mom & baby really enjoyed it. Billie also got to give Holland a little bath this afternoon. She washed her hair and brushed it. Dad got to change Eden's diaper :)

Dr. Ivacko reported that Holland's PDA is "tiny" and will not require surgery for the time being. We are really happy about that. Also another head ultrasound was done today for Holland and what they thought was a grade 2 brain bleed (IVH) from Tuesdays ultrasound was gone!!!

Wednesday, August 18, 2004

What's New

Hi everybody! I know you have all been anxiously awaiting an update, so here it is... Holland is doing excellent. She loves laying on her belly and cozying up in the lamb's wool. She looks really comfy and occasionally wiggles about. She's even wiggled out of her diaper and off of her bed on occasion! Holland has continued on really low vent settings and as long as all goes well, we are looking to try the CPAP again soon. Her weight today was up to 1 lb 10 oz and the difference is noticeable. She actually looks big to us! They are still detecting a small PDA. An echocardiogram tomorrow will show how big it is and will help to make decisions regarding whether she is going to need the ligation surgery. As long as it continues the same with no clinically significant flow through it, and no symptoms, or if it gets smaller or closes, she will not need the surgery. If it gets larger she will need it. We found out yesterday that Holland also has a grade 2 IVH in her left ventricle. We're really hoping the bleeding will resolve without any lasting problems for both girls. So for all those praying out there keep this in mind.

Eden was transferred back to St. Joe's on Monday afternoon around 1pm. We were so happy to see the team from St. Joe's walk through the door at the U. It felt like they were coming to take her home! She got great care at U of M, but it is so much nicer to have them together again. It is also a lot easier for us visiting at only one hospital. Eden is doing good since her return. Today she began feeding. Her weight is down to around 1 lb 4 oz, but within the next week I expect that she will be fully recovered. Eden also got to lay on her belly for the first time today. She loved it as much as Holland does! Eden's bilirubin level was high on her return (up to 16), so she has been on phototherapy for the past couple of days. Today it was down to 6.6 so the lights should come off by tomorrow morning. They would like it to be below 5. You can't really tell in the pictures, but Eden is quite a fuzzy little girl (lanugo). Her hair seems to grow by the day. The hair on her head is dark and is starting to flip out around the edges. She's quite a cutie! Of course they both are. In fact everything they do is cute. They may even be the cutest babies ever. Could I be partial??? I think not...

Sunday, August 15, 2004

Kangaroo Love

Today was a good day for both of our daughters. The most exciting part was that we got to do Kangaroo Care with Holland! This is where you hold your baby against your bare skin all wrapped together with warm blankets so your baby can get to know you better. I held her for a half hour before her Daddy held her. We'll start doing this on a regular basis once the girls are stable enough. Thanks so much to Holland's nurse, Kim, for helping us make it happen! It was a very fulfilling experience and helped us feel even more connected to our baby.

They took Holland off of her ventilator today and tried out a CPAP. Instead of breathing for her, this is a machine that holds some pressure in her lungs as she takes her own breaths. She stayed on it for about 20 minutes, but had to go back to the ventilator because she just wasn't breathing enough. She is on caffeine to stimulate more breathing on her own, and we'll try CPAP again in a few days. Holland also began feeding today. Yay! Finally a use for all that stored breastmilk! It makes me feel good to know that I am able to do something to help make her strong.

Eden's chest tube was removed today and she will be returning to St. Joe's to be with her sister tomorrow. We're very ready to have her come back. She had a rough day on Friday trying to recuperate from her surgery. She was having some difficulty with her blood pressure being too low (hypotension) and was given several medications to raise it. Hydrocortisone, which is given as a last resort, finally worked, but has actually raised it a bit high. We've been worried about that the past couple of days, but the nurses assure us that it is okay and not too high at this point. We also found out on Friday that her doctors at U of M did a head ultrasound prior to surgery on Thursday and found that she has a grade 2 intraventricular hemorrhage (IVH), also known as bleeding in the brain. We've been reassured by Dr. Weiner that most Grade 1 and 2 bleeds resolve on their own with no lasting effects, but it makes us nervous nonetheless. A followup ultrasound, which was done 24 hours post-surgery showed that there has been no change, so I guess that is a good sign that it hasn't gotten worse. Hopefully over the next few days we'll be able to report that there's been improvement. The good news is that Eden came off the oscillator yesterday and is back on the conventional ventilator and doing well. She really is moving in the right direction!

Thursday, August 12, 2004

Post Surgery

Eden had the PDA surgery and everything went very well. It took only 15 minutes for the actual procedure and she is now recovering nicely. We got to see her around 5:30 today post surgery. She looks peaceful but it was a little scary for me to see her so still from the sedation that she was given. I guess I should keep in mind that it is better to see her like that than to see her in pain. The incision is under her arm between some ribs. It is only about 1.5 cm but it looks big on her! Right now she has a chest tube in the incision to drain any excess fluids. That should come out in 24 to 48 hours then she should be able to transfer back to St. Joe's to be with her sister.

Holland had a really awesome day today. She is being weaned off of Dopamine and is holding her blood pressure up nicely. The humidity in her isolette was turned off and her body temp has been steady as well. Her platelette counts have been stable without having to receive any transfusions since Monday. Today the line in her belly button was taken out and a PIC line was put in and worked great with just one attempt. I was very happy about that because I just hate when they have to be poked! The nurses at St. Joe's have been really supportive, compassionate, and thorough in their care of our babies. Holland has had the same nurse pretty consistently during the day and we feel really secure leaving Holland in Ruthann's care. She is great!

Wednesday, August 11, 2004

Eden Opens Her Eyes!

We had a nice surprise today while visiting Eden. The respiratory therapist came by to help her nurse Natasha suction Eden. They put the top to the Omnibed up and we were able to get a good look at our baby without looking through plastic. She chose the perfect time to open up both of her eyes and look up at us. We talked to her and we like to think that she looked right at her mom and dad. We told her what a good girl she is and how pretty she looks with her eyes open. It was a really awesome moment for both of us and we got some really cute pictures of her looking at us.

Eden Transferred to U of M

Yesterday evening Eden was transferred to U of M to wait for heart surgery to close the open ductus. We didn't get to ride in the ambulance because it was full. A team of three rode with her a neonatologist, respiratory therapist, and a nurse. She did really well on the ride over and settled in nicely at the Holden NICU. They put her back on the oscillator and she now just has to sit tight and wait. We like the NICU there. They have Eden in a really high-tech isolette called a Giraffe. The nurse said they run about $35,000 a piece. She is a cool nurse. She did Eden's first foot and hand prints for us. They also weighed her and she is up to 1 lb 8 oz! After getting familiar with our new surroundings and making sure Eden was settled we headed back once more to St. Joe to check on Holland and see how she is handling her sister not being there. It was a late night. Long and exhausting...

Today I left work to see Holland during my lunch break and everything is going good. She is doing well except a bit temperamental whenever the nurses reach into the isolette. Once Mom (Billie) shows up and puts her hands on her she is very calm. They weighed her yesterday and she is a whopping 1 lb 7 oz! She is gaining little by little but they tell us to take it with a grain of salt as they are pumping a lot of fluids into her. They also tell us that her platelets are at 124,000, up from yesterday's count of 111,000. This is good. Billie called U of M and they said Eden had a good night. They still haven't heard when the surgery will be. We are waiting patiently...

Tuesday, August 10, 2004

PDA Blues

Based on today's echocardiogram Dr. Weiner tells us that Eden's ductus is still open (PDA). It appears that the 3 rounds of indomethacin helped to make it smaller but it did not close all the way. She will have to have surgery to have a clamp put into place. We were so hopeful that it would close. No such luck. For some reason they don't do the surgery at St. Joseph so she will have to be transferred to either U of M Hospital in Ann Arbor or Children's Hospital of Michigan in Detroit. Dr. Weiner says that there are really good doctors at both but that he believes it would be wiser for her to go the short distance to U of M instead of a long ride out to Detroit. For the ride over they will have to take her off the oscillator and put her back on the conventional ventilator which she did not do so well on. We agree that the shorter trip seems like a better idea even though she may not be able to be transferred back. I guess U of M likes to keep them whereas Children's always sends them back. This is somewhat disheartening as we really don't want to separate the girls. We will see what happens. Hopefully after the surgery on Thursday she will be able to come back. Although Holland may be joining her shortly if the drugs don't work to close her PDA.

Sunday, August 08, 2004

Holland's Bout With Infection

Holland took a turn for the worse on the evening of August 5th. Her platelet count dropped rather suddenly and the doctors indicated that they suspected she had an infection. Her platelet count was between 10,000 and 11,000. A normal range is between 140,000 and 450,000, so the drop was extrememly significant. Following a blood culture we found out that she was infected with a "gram negative rod" and they began treating her with some broad spectrum antibiotics to treat that type of bacteria. We eventually found out that the bacteria was called Enterobacter Clocae and the antibiotics were changed to target that bacteria. On the night of the 5th Dr. Ivacko thought it would be a good idea to sample some spinal fluid to make sure it was not infected as this would change the length of treatment. They attempted a lumbar puncture (spinal tap) but were not successful in obtaining any fluid. The morning of the 6th we called the hospital to check in and found that things were not going well. Dr. Everett informed us that Holland's platelet counts were still extremely low and that at any point things could go downhill. We rushed to the hospital early that morning and stayed all day. This was a very emotionally draining day for me as I really began to contemplate the fact that one or both of my babies might not make it. Over the course of 3 or 4 days Holland received several transfusions of platelets and packed red blood cells. She also received 2 doses of immunoglobulin. The 6th and 7th were really long stressful days and we didn't get a lot of good news regarding Holland's condition. Her platelet counts would crawl up to the mid 20's, then drop again into the teens. It was very disheartening. Finally on the morning of the 8th we were overjoyed to get good news. Platelets were up to 140,000! Through it all Holland was a really tough cookie. All of her tiny little parts continued to function and she plugged right along...